bill 112
Member
Yeah true it does seem encouraging but id be cautious Fish had the treatment didnt he??Might be worth talking to him for better insight although if I had the opportunity id probably go for it
AM-101
- Thread starter Markku
- Start date
MemberLol yea it's a weird dilemma to be in. I went through the other messages and I think he said it got better but doesn't know if it was the drug. @Fish. Any advice would be appreciated.
Yeah true it does seem encouraging but id be cautious Fish had the treatment didnt he??Might be worth talking to him for better insight although if I had the opportunity id probably go for it
bill 112
Member
Yeah its really hard to know if only their reports were perfect but when they say some mild to moderate adverse reactions were noted it raises doubt which makes it harder to decide whether to do it or not.....suppose the only way to know if its effective or not is when they test it on the 4-12 month category
Yea Cullenbohannon. IDK it is a tough position to be in with T. IDK if I would do it for sure either at this point. I would reflect and weigh the options. I think most people did not have anything bad happen to them thus far. Cullenbohannon I say do it, If you have a busted knee, one gets it operated on. If there is anything out there that can help, I know it sounds risky, but I do not think taking that risk is an unreasonable one at this point. I think you will be good. I
And did the NJ site people say when they are going to have the site up and running?
And did the NJ site people say when they are going to have the site up and running?
From the study documentation it says that all the increases in tinnitus have been temporary and most likely due to the perforation of the ear drum. If I was eligible I would participate.
Yes Hudsons right. I think the fear anyone would have doing a clinical trial is quite normal. But it is in phase 3, and there will be alot of people getting an injection and alot have been injected. The road has already been traveled thus far by the brave people in earlier trials. So yes. Cullenbohannon this does not seem as risky as other people around you might think, given what the research has shown.
Well at this point I haven't gotten into anything specific. I had a ton of questions and I will call back tommorow. The site I talked to was in Pennsylvania. But I am more keen on the one in Neptune NJ. It is actually where I was borne. A nice coincidence. As soon as I know more I will post info. It's nice to get advice from fellow t sufferers. My family and friends have a tough time understanding. Thanks to everyone.
The way I look at it. Is imagine if you had a reduced volume of T in one year from now because of it. It would bring tears to my eyes for sure. This whole experience has been amazingly real and has brought great understanding on what human suffering is about. My early adult years of my life I forgot how to feel things. I have always been quite nervous around people. With my T now I feel as if I will never have an oppurtunity to touch someone. To feel love. T for me right now is quite disabling. It is not the T that bothers me, it is missing out on all the great things in life that I am having trouble doing ( A special conversation, a decent job). For me it would be an utter miracle if this trial would help me. I know there is always a possibility that it could go wrong. But as Hudson mentioned the research shows, things can possibly get better because of this drug. I wish I could feel something more so than just suffering from a condition that I find to be quite torturous (right now). I wish I could also- being that I have experienced suffering from T and other forms of suffering we all go through- be with better health and help others who are suffering. Life is all about suffering. It brings great meaning. But the one thing that bothers me the most is apathy. PEople with T understand that others seem to laugh at our condition (as just a ringing in the ear). Cullenbohannon imagine if a year from now your T is reduced. If it is the case that you do this trial. I think it is not a big risk (as others might think), and it is a form of treatment worth the time to take part in. Imagine the perspective you would have being one of the first people in human history to have their T reduced. That perspective that can be gained can bring great insight into the realm of compassion. What a great gift to get in having the T reduced.
and that gift is not just for the person who gets their T reduced. It is a gift that the cosmos gave to every person. I strangely believe in many ways people are more connected then how most people envision human connections.
So why can't you participate in the study? If you have only had tinnitus since 12/13 I would participate if I were you. The actual procedure itself is puncturing the ear drum; ENTs literally do this hundreds of thousands, if not millions of times a year worldwide. It's a well established and studied procedure. As far as the study drug is concerned, you would be getting esketamine, a derivative of ketamine. It is an anesthetic that is used in medical practice and has been for years. It too has been studied and been well documented to be safe. The dose that they are giving is somewhere near 1/1000th of a clinical dose used for anesthesia. They can do this because they are applying the drug locally. There is very little risk of systemic exposure (to a drug that's used systemically in medicine anyway).
The safety studies have found the procedure and drug to be well tolerated in patients. The question now is if it is truly efficacious. I would be willing to take a gamble on a successful treatment of my tinnitus to help find out.
I will be partipating. I am ready to go. I am just waiting for them to give me a screening date. They stated that the site I am at is not up and running yet. I suppose it will be up and running within a week or 2. I have already signed my informed consent papers.
Yes. As of right now I am set to go with them. I really just want to get this trial over and done with.
I suppose they will be calling me shortly. They told me the other day that the site was not up and running yet.
I got in contact with two sites. One will send me information on monday the other is suppose to be open till 3:30 , i called an hour before and they didn't pick up. I will call them back monday.
sounds like you are going thru with it. can I ask why so early in your T, there is still plenty of time for it to go away, no?
I would say I'm 60 percent at this point. I got in contact with them because I think they might have some more info and anecdotal stories we don't know. Also to be honest I'm the type of person who tries to be very proactive about things that affect my life. With t we all know there is no controlling it so if there is a chance this will speed up the recovery process and get me back to a point where t had no influence on my life it's something I would seriously consider.
is your T bad. like really loud? I am 3 months in and still struggling, but most of the time it is probably a 4 out of 10,it changes a lot from my head to my ears, I think I got it from changing AD's medicines so I am still hoping it could go away. do you take any meds? how are you doing overall?
Hey, im like an hour an 20 from neptune... This is one of the sites where there doin am 101?
The first 4 or 5 weeks i was pretty bad. No sleep bad anxiety, etc. When it first starts to be honest im not sure it really matters how loud it is because you panic and you cant help it. Its something so alien and different that your not use to. So when it first started yea i thought it was really loud. @I who love music gave me some good advice to measure you response which i try to do and it helps. I don't like to think about if it goes up or goes down, i only focus on the things i can control. I was using xanax in the first month or so and I have cut my use down considerably i also had to take a blood pressure med because my anxiety and heart, blood pressure where out of control. I do use zinc don't know if it does anything but magnesium and melatonin to sleep. and use a white noise masker or leave the tv on. Still i have good days and bad days. I was about to go to law school or register before my t set in and once it did i was to panicked, so im working and studying for the lsat a lot and just trying to keep busy. I make myself as busy as possible doing things so i cant think about my t and by the time i get home im so tired that i can fall asleep easier than i did at the beginning. Its a work in progress i guess still though if i start to pay attention to it its very hard to mask, and then i get stressed and it seems like it gets louder so I try not to give it any. I hope that was helpful.
Auris-Trials@Medpace.com Grace, this is their email. Tell them your location and that your interested in the t trials, they will let you know if there is any where near you.
I gave in today, I got a prescription for Neurontin for the anxiety. I was trying to take Klonopin only when needed and funny enough the last few nights I was finally able to sleep without anything. Then last night I was up all night and finally ate a Klonopin at 5am but still couldn't sleep. I need to break the obsession/anxiety cycle and hopefully these meds which build up daily and work 24/7 will help me. then I will try to come off them. I feel so weak doing it but my therapist said to not look at it that way. I usually get a few good hours now every night, but every morning is rough. Its funny sometines I feel so good I try to help others that are struggling and then hours later I feel broken again. I guess that is normal and hopefully a sign I am making some progress. I wish you well on your decision for the test.
Kev, what you are going through is quite normal. just keep pushing forward. You are making progress.
thanks man, I sometimes feel so defeated, I am a very lucky 50 year old guy wiht a great wife, 3 great kids, I live in a nice house and overall have great health, but this shit really sent me for a ride. I am a big baby now and I am even tearing up just writing to you now. I hope I can stop obsessing and get on with my life, I have been in a holding pattern for 3 months now!\
Hey everyone.. Quick question about am 101.. As you all know i do have T but it is very mild, slight hissing in both ears that are usually masked by a fan and tv or even sitting next to the fridge and that noise it makes masks it almost fully. Now i just found out that one of the trial locations are only 25 minites away from me. I have had T for 4 months now to this exact date and seem to be a good canidate, but My T since it is so mild it is not yet a problem in my life. The only problem i have is the fear of it getting worse. Would they take me in for very mild Noise induced T? And if so the only thing i feel if this drug can do any good is it would probably cure mine completely cause its soo quiet.. But sounds too good to be true. Im nervous about doing this and making it worse or is there a less chance of that? I just dont want 6 months - 2 years from now and get a bad spike and look back goin i had my chance to give am101 a shot and i didnt. Plus my family not sure how they would react to me considering this. Is this all free? Again im not too knowledgable about it so any help would very much be appreciated!!!
I just called them also and they closed at 3 30 so im gonna call them on monday also and ask some questions.
bill 112
Member
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